| Primary Author: | Rebeka B. Watson Campbell, PhD, RN |
| Organization | UTMB Galveston |
Abstract
Purpose
The purpose of this transcendental phenomenological study was to explore the experiences of adult individuals following discharge from a hospice program due to decertification related to extended prognosis.
Background
In 2009, approximately 243,000 individuals were discharged from hospice alive (NHPCO, 2010). Literature indicates that approximately 35% (85,050) of those discharged will die within 6 months (Kutner et al., 2004). Compounding the issue is the increase in enrollment of patients with chronic, non-malignant disease processes. Due to the difficulty in prognosis associated with chronic illnesses many patients are decertified as ineligible because of extended prognosis. Although the characteristics and demographics of discharged patients are well documented, the literature does not describe the experience from the perspective of the patient or their family member.
Design
Moustakas’s (1994) approach to transcendental phenomenology guided the design of this study. Research questions were: (a) how do participants perceive and describe the experience of being discharged alive from hospice, and (b) how do participants perceive and describe their quality of life after a live hospice discharge? Twelve volunteers aged 35-92 years, who had experienced live hospice discharge, were recruited through purposive, snowball sampling. Data collection included in-depth, open-ended interviews. Interviews occurred at the participants’ residences and were recorded and transcribed verbatim. The initial interview question was: “Tell me about being discharged from hospice.” Data analysis followed Moustakas’s (1994) approach utilizing Lincoln and Guba’s (1985) trustworthiness criteria for rigor.
Results
Findings included two primary themes: suffering “as…” and the paradox of hospice discharge. These primary themes were supported by 12 subthemes: having support and needing support, mixed feelings, not dying fast enough, hospice equals life, abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, physical decline, and bearing exhaustive witness.
Conclusion
Understanding the experience of patients encourages review of policies and guidelines limiting hospice enrollment and most importantly, highlights the need for more effective transitions out of hospice and into traditional health care.
Bibliography
- Kutner, J., Meyer, S., Beaty, B., Kassner, C., Nowels, D., & Beehler, C. (2004). Outcomes and characteristics of patients discharged alive from hospice. Journal of the American Geriatrics Society, 52, 1337-1342.
- Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
- Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA: Sage.
- NHPCO. (2010). NHPCO facts and figures: Hospice care in America. Retrieved January 15, 2011 from http://www.nhpco.org/files/public/Statistics_Research/Hospice_Facts_Figu…
© Improvement Science Research Network, 2012
The ISRN published this as received and with permission from the author(s).